A Florida mom’s lonely fight for her disabled son

Tereza Pereira had cared for her woefully disabled son at home for most of his life. But she was in her 50s now, working two jobs to stay afloat, and state health administrators had repeatedly refused to pay for enough in-home nursing care to keep Bryan safe.

Pereira wanted her teenage son to live at a place called Baby House, a small group home for medically fragile children and young adults, with a long track record of treating children like Bryan as family. His care would have cost the state $300 per day there.

State health and disability administrators had a different plan: For $200 more each day, Bryan would live in a nursing home.

“I don’t want my son in this place,” Pereira wrote to disability administrators of the Florida Club Care nursing home in Miami Gardens. “If something happened with my son, [if] he died,” she wrote, “I will feel that this place killed” him.

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Disability administrators insisted that Bryan move in to the nursing home. And there he died, a year later, on July 29, 2010.

“The best place for Bryan was with me,” Pereira said. “I wanted my son to leave this world in peace — not the way he passed away.”

Bryan Louzada was one of five medically complex children to die at Florida nursing homes in the last six months of 2010 — and among 130 such children who have died in those homes since January 2006, records show. Though medically fragile children who live with their parents, or in a community setting, also die, state records show they die in far lower numbers.

State health administrators insist that the choices of parents like Tereza Pereira are the guiding force behind their decisions on where sick children live. But interviews and records show Pereira had fought for half Bryan’s life to find a home-like setting for him. And at every turn state health and disability chiefs steered him toward an institution or nursing home.

It is the dirty little secret of Florida’s health and social service system: Though institutional care can be dramatically more expensive than in-home care, state agencies push children toward institutions.

Here’s why: Medicaid, the state and federal insurance program for needy and disabled people, has become the insurer of last resort for virtually all children with catastrophic disabilities. Under federal law, a nursing home or facility bed is an entitlement, and that means Florida health administrators must provide such a bed to any family that asks. Sometimes-far-less-costly in-home nursing services are not an entitlement. Because they can, Florida lawmakers cap spending for such care, resulting in a waiting list of 25,000 for home- and community-based services.

Federal health polices “lead to irrational outcomes,” said Jim DeBeaugrine, who was director of the state Agency for Persons with Disabilities under former Gov. Charlie Crist. “People go into higher-cost facilities than what they need, and, quite frankly, what is best for them.”

“It’s referred to as the ‘institutional bias,’ and that’s what the system has, because that’s where the dollars have to go,” DeBeaugrine added. “It’s nonsensical.”

The irrational outcome in Bryan’s case was that a sickly teen was forced to live in a nursing home that is considered one of the state’s worst — Golden Glades, formerly known as Florida Club Care, is on the state “nursing home watch list” of homes that did not meet even minimum standards of care during a recent inspection.

After a year of pleading, Pereira said disability administrators told her they would consider removing him from the nursing home in May 2010. Before they could, he died.

“I didn’t have a choice,” Pereira said. “Now Bryan has passed away. What will I do with the rest of my life?”

The U.S. Justice Department has sharply criticized the state, saying it is warehousing disabled children like Bryan in adult nursing homes, violating their rights in the process.

Pereira, a psychologist in her native Brazil, was still grieving the AIDS-related death of her 5-year-old son Bernardo, who had hemophilia and had been given an infected blood transfusion, when she learned she was pregnant with Bryan. It was as if she’d been given a second chance.

But when Pereira was 27 weeks into her term — and on a trip to Miami — she suddenly went into labor. The consequences were calamitous.

Bryan suffered a hemorrhage, and spinal fluid flooded his skull. He began to experience seizures. Before doctors could insert a shunt to drain the cerebral fluid, he contracted meningitis, a life-threatening infection.

In the nursery at Jackson Memorial, Bryan’s head swelled, his eyes bulged. Pereira went to a local Catholic church to pray when she was interrupted by a parishioner. “A lady touched me. She said, ‘talk to me.’ ” The woman was a pediatrician at Miami Children’s Hospital, and Pereira transferred her son there.

“My son is dying,” she said. “I have nothing to lose.”

At Miami Children’s, doctors inserted two shunts into Bryan’s under-developed brain and fought his infection. And though he slowly recovered, the list of his final diagnoses proved to be long and terrible: cerebral palsy, mental retardation, blindness, seizures, severe reflux, asthma and hemophilia.

Medical professionals told Pereira to send her son to an institution. Instead Pereira — whose husband returned home to Brazil, leaving her with two small children — took him home, and organized her small Kendall apartment into a makeshift hospital.

For the next 18 years, Pereira kept detailed records of Bryan’s health and his often-cruel journey through the state’s medical and social service system.

There were visits to the pediatrician, the hematologist, the neurologist, the gastroenterologist and the child development experts. Physical therapists stretched and relaxed Bryan’s legs, and occupational therapists worked to keep his fists from becoming permanently clenched. Speech therapists helped him suck and swallow.

Doctors charted every milestone, though they were few, and far between. At one year of age, Bryan had the cognition and the fine motor skills of a one month old.

Bryan remained with his mother until he was about 6.

Pereira says disability administrators refused to provide her with enough nursing hours to enable her to both work and be a caregiver. Hospital case notes quote a case worker as saying Pereira “lacked the facilities at home to provide care for Bryan.”

Bryan’s older sister was a teenager, and was struggling over the caregiver demands on her life. “She was crying. She said, ‘I want a normal life. I can’t stand this anymore.’ ”

Pereira felt like the state was forcing her to choose between her two children.

“All the social workers and doctors pressed me to put my son in a group home, because my daughter was very depressed, without any attention,” Pereira wrote years later in an email to the state. “But Bryan will continue to be my son, and I am his guardian.”

Pereira said she asked disability administrators to place her son in Baby House, a specialty group home run by United Cerebral Palsy, a national disability provider. Pereira had toured the home, and liked what she saw.

But Baby House is not an institution, and Medicaid administrators refused to pay. Bryan ended up in what is called an intermediate-care facility, an institution for people with severe disabilities.

Bryan spent most of the next decade bouncing between developmental disability institutions, nursing homes and Miami Children’s, which had become the hospital where Pereira felt her son was safest. In 2005, when Pereira had to move her son from one facility to another, disability administrators gave her a state handbook. “You’re The Driver” it said, under a picture of a gas station. The message: Parents and guardians are decision makers over how and where loved ones receive care.

To Pereira, it seemed like a cruel joke. “He was my son,” she said. “I wanted to make the decisions for him.”

Pereira’s records document a litany of disappointments: At one institution in Miami, Bryan was repeatedly bitten by another child. At a nursing home in Plantation, his hemophilia was so poorly controlled, she said, that he developed racoon eyes from internal bleeding.

Reordering her life

By the mid-2000s, Pereira had had enough. Bryan was at a nursing home in Broward for only a month when Pereira called police to report he’d been sorely neglected, police reports show. “I was scared he would die,” she said. “I was scared he would suffer.”

She removed him from the nursing home, and took him home — again.

Photos from that time show how Pereira rearranged her world to take care of her then-16-year-old son. She moved all the furniture out of her cramped living room to accommodate Bryan’s hospital bed. White plastic shelves were moved in to store diapers, wipes, a dozen medications, and a host of medical gadgets and supplies. An IV towered over the bed, along with an adjustable lamp to illuminate Bryan when his mom fed him and administered medications.

But the ping-ponging continued: Unable to care for Bryan with limited in-home nursing. Pereira agreed to send him again to a disability institution. “What time am I going to take a shower? I am alone,” she said. “If I had to go to the supermarket, who would take care of Bryan?”

Bryan went to Baptist Hospital in Miami, then back to Miami Children’s. The hospital was eager for him to leave, but Pereira was not eager to place him in another nursing home. “The hospital is making my life impossible,” she wrote to the state, adding social workers were insisting Bryan once again go to a nursing home.

Bleak choices

The state offered Pereira two choices: Bryan could return home with 10 hours each day of in-home nursing help — an option a judge later called “unacceptable as it would not allow the mother to work, and would not meet [Bryan’s] medical needs, as he requires an extensive amount of care just for feedings.”

Or he could go to a nursing home.

Pereira wanted a third choice. She had been to Baby House, in a small, non-descript ranch house off of Northeast 163rd Street in North Miami Beach. Baby House’s director, Carol Montiel, had visited Bryan. “She said my son is a lovely, handsome boy,” Pereira wrote, and she would take very good care of him.

At Baby House, she wrote, staff would see him as a human being, “not as a dollar.”

In March 2007, Pereira began her futile campaign to move her son to Baby House. She applied for a state program that provides money for non-institutional care for disabled people, and was, instead, placed on a long waiting list.

Pereira wrote a longhand note to health administrators. “I am alone in this country,” she said. “I am not able to care [for] Bryan in home even with home care,” because the nursing hours weren’t sufficient, and because the nurses often failed to show up, or showed up late, even when they were scheduled.” It was, she wrote, “a disaster.”

A March 24, 2007, email to the Department of Children & Families had this in the subject line: “Please. I beg.”

“I want to beg, please, that my son be approved” for community-based care, the only funding pot the state could use to pay for Baby House. “I don’t have anybody in this country. All my family is in Brazil,” she wrote

“If Bryan survived so far, it is because I have been a good mother caring for my son,” she added. “I cannot permit Bryan to suffer any more.”

The waiting list

To get Bryan into Baby House, Pereira would first have to get him off the state’s disability wait list — where he was languishing along with 25,000 other Floridians. The only way to get off that list, records show, would be for Bryan to become “homeless,” or “in danger of being neglected or abused.” Pereira was being punished for being a good mother.

In a letter dated July 23, 2008, a worker told Pereira the Agency for Persons with Disabilities planned to cut spending on those in community-based programs to accommodate a few clients stuck on the waiting list. The shift, which might have moved him up a few notches, was referred to as a “cost efficiency.”

“They were only interested in dollars and cents, and I told them that,” said Carol Montiel, the Baby House director who had been speaking with Pereira for years, and was trying desperately to help.

Pereira wrote letters to then-U.S. Reps. Kendrick Meek and Debbie Wasserman Schultz, and Sen. Bill Nelson. She went to Washington for a family advocacy day and was pictured in The Herald alongside Rep. Ileana Ros-Lehtinen.

“Please remember,” she wrote to the state, “that Bryan is a person with very involved medical and emotional needs, and not just another ‘case.’ ”

“I want to be with my heart full and happy that I did the best for him,” she wrote. “I don’t want him to suffer anymore.”

‘Mommy is here’

Two of Pereira’s thick files document a desperate mother’s attempt to keep her son out of a nursing home — in legal format: notices of continuance, subpoenas for deposition, proposed orders to dismiss, multiple notices of hearings, and a final order.

At a hearing in July 2007, an administrator with Florida’s Agency for Persons with Disabilities and a nurse with the state’s Agency for Health Care Administration testified that Bryan’s medical needs could be met in a nursing home. Pereira, who speaks fluent Portuguese but strained English, represented herself. The state, she said, “hired a lawyer to go to court.”

A state administrative law judge ruled against her two months later. He offered Pereira a half-sentence as a consolation:

“That [Bryan] has survived to the age of 15 is a testament to his mother’s devotion, and the skilled medical care he has received since birth, primarily at Miami Children’s Hospital.”

Bryan was sent to the nursing home.

He remained there for a year, and his mother drove the length of Miami-Dade County — from Kendall to near County Line Road — as often as she could to see him.

In the middle of the night on July 29, 2010, Pereira says, she had a premonition: “I called there to ask how he was. They told me he was fine; he was sleeping.”

At 5:30 a.m., Bryan was rushed to the Joe DiMaggio Children’s Hospital Emergency Room in Hollywood. Though she had instructed the nursing home to transport him whenever his heart rate exceeded 130, his heart had raced to 178, she said. “Somebody should have noticed.”

At the hospital, Pereira found a doctor performing CPR. She yelled at him to stop. The compressions, she said, would cause him to bleed uncontrollably.

“I said, Bryan, Mommy is here. I will be with you.”

Bryan died at 11:39 a.m. Cause of death: respiratory failure. Pereira said she wanted an autopsy, wanted to know if the death could have been avoided, but doctors told her she’d have to pay $4,000 to get one.

Without an autopsy, a lawyer told her, she had no recourse against anyone.

“He was safe with me,” Pereira said.

Aside from the nursing home, Pereira said she holds state social service administrators responsible for Bryan’s death — for forcing her to make a terrible choice.